• Wed, Sep 12 2007

Quirky, NOS

The “top story” in the September 17th Newsweek is entitled You and Your Quirky Kid and might also have been called “To diagnose or not to diagnose: That is the question.” Writer Lorraine Ali opens the article by discussing her own 4-year-old son who is one among the 13 other kids who, when he is to sing “Let’s All Sing Like the Birdies Sing” for a preschool musical, broke ranks and began marching to his own tune (involving him singing something about “babies and broccoli”). Ali’s son is already “different” at the age of 4, but is he a “nonconformist kid” or does he have—ought he to have—a diagnosis of ADHD or autism spectrum disorder? Is “quirky” enough of a diagnosis and an explanation when your five-year-old boy is fascinated by knitting? Won’t giving a child who is so “borderline” a “label” involving a “syndrome” or a “disorder” result in a permanent stigma being attached to the child? Isn’t it enough just to enjoy one’s child, oddball interests (plumbing, perhaps) and celebrate his or her lovely, different, unique self?

My own answer is “of course yes! but”: If the quirkiness is somehow impeding a child’s learning or making school and, indeed, friendships, difficult, then a more formal diagnosis—achieved through appointments and evaluations with various specialists, developmental psychologists, pediatric neurologists, neuropyschiatrists, occupational therapists, etc., etc., etc.—-may help more than hinder.

Regarding my own Charlie diagnosis—-autism, in July of 1999—was not a question but, as Charlie’s second birthday approached and he had no words or bits of words, a relief and a necessity. With that 299.0 code on our insurance forms and “autism” as a diagnosis, Charlie “qualified” for the services that were the beginning of helping him. (Neither insurance nor the public schools provided all that he needs, but that is a different story.) For us, any sense of stigma in a label called autism was soon erased by the reality of the looks, stares, and complete indifference the three of us received in countless public settings. When he was younger, there was crying, lying on the ground, back-arching (these being attempts at communication in a boy with so little language); now that Charlie is older, something about him (a boy just short of being five feet tall, speaking in telegraphic bursts of “PoPo [Cantonese for "maternal grandmother], school doctor,” looking in other directions for long periods when spoken too: These may well be something more than quirks, and they signal “different kid” in a very few seconds.

The Newsweek article looks at the whole bigger phenomenon of diagnosing children with psychiatric conditions (including bipolar disorder) and of diagnosing children, period. Many of the persons interviewed for the article make statements that reveal societal attitudes about autism, difference, and what we think about childhood today at the start of the 21st century.

Two medical professionals, Dr. Elizabeth Berger and Dr. Perri Klass, speak reasonably about the uses of diagnosis, and also about the pressure to be a “normal child.” “Normality” has been elevated to an end in itself, and even to a spiritual quality in some cases as Berger, a child and adolescent psychiatrist whose books include Raising Kids With Character, says:

“Of course it is a source of deep sorrow when it is obvious that a youngster can never lead ‘a normal life’ because of special needs……”All the same, there is something amiss when every mother is susceptible to fears whether or not this week’s fashionable diagnosis applies to her child. There is something unexamined in our thinking when we elevate the need for normalcy to a state of spiritual grace, and live under a constant anxiety that we fail to measure up to its demands.”

Is normalcy indeed viewed as a quasi-religious value, so that not to be normal—”weird,” “geeky,” “odd”—is a sign of some kind of moral failing?

Dr. Klass is a pediatrician and coauthor of Quirky Kids: Understanding and Helping Your Child Who Doesn’t Fit In—When to Worry and When Not to Worry and reflects on how a parent may find it difficult to distinguish between a kid who likes to go her own way, and a kid who needs more than “just letting her be”:

“Parents need to ask themselves, Is this making him unhappy or just making me unhappy?….. Is he having a perfectly good time in school, but he’s not interested in the things the other kids are interested in? Or is he desperately trying to be part of something but doesn’t seem to understand how? I’m not talking about a child who’s a developmental emergency, I’m talking about the kid who’s different.”

Mary-Dean Barringer, of the nonprofit learning institute All Kinds of Minds, is noted as saying that “we put too much emphasis on the labels that others assign to our kids” and equates a diagnosis like autism as an “aberration”:

“We’re absolutely appalled by this diagnosis of Asperger’s syndrome……..These are very highly specialized minds, and to put a syndrome on it and treat it as an aberration does damage to kids and families. There are still challenges there on how to manage it, but why not call it a highly specialized mind phenomenon rather than a disorder? That label alone shapes public perception about uniqueness and quirkiness.”

I would like to say, or hope that we might say, that an autistic child does have some sort of diagnosis and that he or she has a sort of “highly specialized mind phenomenon.” I do not know what it is that enables my son Charlie always to know when the next wave is coming as he swims in the ocean, or why he cannot really read (and there have been plenty of specialists who have worked with Charlie) and, too, that he is just not drawn to the written word. Charlie’s is a mind that seems especially attuned to sound and motion and the feel of both of these; he does not simply march to a different drummer, marching is not the point for Charlie.

Charlie swaggers and he beats his own drum.

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  • http://club166blogspot.com Club 166

    I resisted pursuing a diagnosis for Buddy Boy initially, insisting that he was just a spirited, quirky, kid. I didn’t want him labeled by society.

    I relented when it became obvious that his problems were seriously interfering with his ability to function on a day to day basis.

    Perhaps the greatest benefit of having an autism diagnosis has been that it has (mostly) protected Buddy Boy from being labeled as emotionally disturbed and antisocial personality disorder.

    It also made it a bit easier to get speech therapy, which in my mind has been the primary (only?) service provided by the schools that actually seemed to help him.

    Joe

  • Kate

    Interesting food for thought.

    We got a diagnosis of Asperger’s when our teenager was thirteen last year.

    If my child had been dx’d eariler in life it certainly would have explained a lot, saved us from heartache and misunderstandings and pointed us to therapies that would have assisted in the educational and physical arena.

    I am all for quirky. That would be my teenager and I love him for it. But he also has serious problems with linguistically complex information and memory. Having him tested (and consequently labeled) gave us a starting place to work on building up his strengths and find ways for him to compensate where his skill set was low.

    I do agree with the writer who had some discomfort with the term “disorder” or the other term used in association with Asperger’s – “syndrome.” I don’t like using either when reffering to my teernager as I feel these are very limiting terms for a very complex nuerological (and hence, biological) set of symptoms that vary from child to child but I do use it since saying “He sometimes has difficulty processing complex liguistics and pragmatics, along with short term memory recall and gross and fine motor skill challenges” is more than a mouthful and doesn’t cover the half of it.

    I truly don’t see the harm in testing. If a child is just quirky or unique or whatever, the tests will come back negative – your heart and mind are now at ease – and you can go back to enjoying their quirkiness. Way better than quietly worrying and wondering and missing the opportunity to help them.

  • http://blog.seattlepi.nwsource.com/family/ Paul Nyhan

    Kristina, This is one of the best posts I’ve read on any parenting blog, or news story, in a long time. There is a lot there and in the Newsweek article for several others stories.
    Thanks for posting.

  • Rochelle

    I described my son as “quirky” for the first 5 years of his life. I’m not sure I prefer “autistic” but I will say that people are actually kinder to him when they learn he’s autistic than they were when he was “quirky.” Having a diagnosis has been an enormous relief in many ways.

    Still, there is no easy answer…

  • http://stimeyland.blogspot.com Stimey

    Thank you for this. I am right in the middle of this. Is he just quirky and delayed or is he autistic? My son is four, and I believe him to be autistic.

    I really don’t care if that label is put on him or not, I just want him to be able to qualify for the services he needs, and I think that a diagnosis will help.

    Again, thank you. This post spoke to me.

  • http://aoskoli.blogspot.com/ VAB

    The question for us was services. The diagnosis opened the door to services in his current the school that he could not get without the diagnosis. In his previous school, he got similar services without a diagnosis, so we didn’t bother with one.

    Before making the final decision to get the diagnosis, my wife and I asked each other if we were doing the right thing and the one negative was that he would no longer be able to pretend to be neurotypical (to pass) in front of teachers. We judged, however, that there was little chance of him passing in front of teachers anyway, and people are often more tolerant of labeled deviance than unlabeled deviance.

  • Leila

    I have a coworker whose 11-year-son was evaluated by a specialist and considered only “quirky”. This Mom told me with teary eyes that she’s sure her son PDD-NOS or Asperger’s, what with all his sensory, social and behavioral issues, no eye contact, and he was difficult to handle from birth. She wants him to be labeled because he definetely needs therapy.

    In my case, my son was more than quirky, the label was a necessity, his talking was coming real slow and not too functional. Not only that, it is very difficult to teach him discipline, self-help and other adaptive skills. Therapy has made all the difference, and I don’t care what label he gets as long as he learns how to navigate in this world and becomes conversational.

  • Dan

    There seems to be a theme that where ‘quirky’ meets ‘interfering with day to day living,’ that an assessment is in order. I think, at least, that’s what I’d say on the matter.

    For our ‘big boy’ (Chris), the dx was a bit of blessing. We got some help, we got some answers. Most of all, the answers. He wasn’t a ‘bad kid’ or a ‘strong-willed child.’ He had no freakin’ clue what were asking of him. Example, no matter how many times we told him to ‘clean up the blocks,’ he’d ignore us. But, when we started cleaning up the blocks hand-over-hands, he’d clean up all the blocks. And the books. And the stuffed animals. And the legos. If he could’ve got under the sink, I think he would’ve mopped the kitchen. He was NOT difficult or obstinate. Frankly, autism was a relief in some ways.

    With our younger boy (Robbie), we had suspicions early on about his development. His dx registered as “here we go again.” (Or, to my ‘quirky’ way of thinking, “Same Song, Second Verse…A little bit shorter, but not any worse!”

    So, I guess the divide is which aspects of autism are “just quirks” and which are “interfering.” This sort of harkens back to the other thread about “cures.” I would hate for my kids to lose all quirkiness. It’s a badge of honor for me to dress funny at work from time-to-time. I like being a bit corny. Professionally, I’m a “geek.” The last fortress of professional nerdiness. In High School, I volunteered my time to work in the school library. Say it loud, say it proud…I am different!

    But, the distinction….I can do IT stuff, while wearing a tux or a grass-skirt. I can email information to my office in iambic pentameter, haiku or other forms. Shakespearean English is not forbidden in email. None of that is “interfering.”

    Navigating these waters is not something that I think any of us can advise others on…we can and should tell our own tales; and those that listen can (in the words of the Big Book), “take what they like and leave the rest.” Most of my tale would be cautionary.

    Keep Smiling! (It’ll drive the NTs nuts!)

    :-)

    Dan
    Southern Maine

  • http://rationallongevity.blogspot.com AnneC

    “Autistic” is a useful word for expressing why I don’t have a typical skill set, why my senses are tuned differently than most people’s, why I have certain patterns of strength and weakness. It’s also a word that enables me to find other people who I am likely to be able to relate to.

    I guess I am at the point where I see “autistic” as a value-neutral descriptor. Sort of like “quirky”, actually, but more specific in certain ways. And in my case, having a proper autistic spectrum diagnosis entered into my records turned out to be a good thing, since it replaced prior, incorrect, and misleading diagnoses.

  • http://www.autismvox.com Kristina Chew, PhD

    Dan:

    Emails in iambic pentameter:
    I don’t know what could be better.
    Who doesn’t have their quirks,
    And hidden ones may lurk….

  • gettingthere

    While I dislike labels and hesitated about getting a diagnosis, in the end, it was the AS word that got my son the one on one aide he needed so badly. It was a relief to both of us to know that he was not oppositional, insolent or stubborn or that I was not an incompetent mother, totally unfit for the role.

  • http://www.autismvox.com Kristina Chew, PhD

    Anne C, I’d hope that autistic can become more of a “value-neutral descriptor” for more people—-”autism” being a word that does now evoke a lot of feelings and emotions from many persons. I think of the relief my husband Jim felt on learning several years ago that he has ADHD—-he was able to think through why his brain functions as it does, why some things in school had been so difficult for him to learn, why he got certain “looks” from people too frequently.

  • http://rationallongevity.blogspot.com AnneC

    Yes, it is definitely a relief, along the lines of what the title character of “The Ugly Duckling” probably felt (in the context of the story, at least) upon finding out he wasn’t a duckling, and therefore it didn’t make sense to describe himself as a deficient version of one thing when he was really a perfectly healthy “non-duckling” swan.

  • http://club166.blogspot.com/ Club 166

    Another one for Dan:

    Searching for the correct path
    Diagnose or no
    Oh to have a happy swan

    Joe

  • http://miscthing.blogspot.com ange

    We are a family of “quirky.” When I got an OCD dx a few years ago, I remember relief. I thought a) everyone had many of the obsessive symptoms I had but I couldn’t cope (and was thus a failure) and b) that some of the intrusive, compulsive thoughts I was having were actually intentional thoughts and I was therefore a bad/extremely weird person. We joke all the time about Hubby’s ADHD. Never officially dx, but it’s just known. After we had our own quirky boys, our marriage improved (eventually!) so much because I was able to understand that my husband’s quirks, attention issues, and impulsivity are not intentional to tick me off. Yeah, I still get angry sometimes, but we have implemented many modifications and accomodations in our home. In order to get the boys what they need at school and for help at home so that their daily functioning isn’t greatly impacted, we need the labels. When everything is working as it should, and it’s a good day, we all seem “quirky.” On days where modifications and support aren’t available (naturally or otherwise)…well we are all kind of a mess and people look scared!

  • Cliff

    As far as my diagnosis, I found it something of a relief. I hadn’t learned of my diagnosis until I was seventh grade. My parents hadn’t shared information on my diagnosis on the advice of UCLA, coming off Ivar Lovass’ program. They were able to avoid that because I had it, then had it stripped when I no longer “exhibited sufficient autisitc traits for the diagnosis” (essentially, I could trick the test-giver into thinking my mind was now normal). Now, practicalyl it worked at the time, because it didn’t carry the stigma (the stigma, as great as it is now, was much worse then), and I learned n a regular environment. However, they also avioded talking about it with me (also on the advice of UCLA).
    While this was useful in the short term, it had long-term consequences. I wasn’t oblivious to that I was different. It was obvious to me in first grade I really was different, especially when I got put in a “friendship” program, an evasive way to associate me with the mentally retarded kid at school. And I wasn’t competent at school, less for my thoughts as the inability to write anything that could be read and for soem residual communication issues.
    Of coruse, the “autism” diagnosis I had never heard of didn’t come to mind. I then thought I was mentally retarded, a thought held for another four years. After that, I was “deficient”, and when I got a 140 on an IQ test (having gotten 60 pre-diagnosis and a 100 just after being stripped of the diagnosis), I was “wacked”.

    When I finally found a letter that mentioned it, I looked it up online. It all clicked. I wasn’t some deficient psychotic freak-child anymore. And that was really freeing. I think that it made my life overall much more understandable, and I was suddenly able to comunicate things I hadn’t before. I even learned I had different sensory input; everyone wasn’t incredibly stoic, they just percieved the world very differently.
    So, given that whole aspect of my life, I believe that a diagnosis is useful for the child, if anything. There is an issue of when to talk in-depth about it, though; I’d probably start about the sex-ed time so (perhaps a little later) that the child doesn’t overrepresent it or use it immaturely. But, in the long run, it’s really important and freeing.

  • http://www.autismvox.com Kristina Chew, PhD

    ange, we’re a family of quirks too. Charlie’s being autistic and understanding his “different” wiring has led to Jim and me being more honest about ourselves—-not always easy to own up to but ultimately, as Cliff points out.

    Cliff, thank you for writing here—-my son has a Lovaas consultant and, when he was much younger, I read the books by parents who had “recovered” their children from autism through ABA, or whose children had “lost” their diagnosis. This initially seemed an elusive goal and it soon became apparent that this would not happen for Charlie, who has always been in special ed classrooms and does not have a lot of language. Charlie has been aware of being different for awhile.

    I really have to thank you again for writing here. My husband and I have often asked ourselves, how could a child really recover? They might be mainstreamed, be academically at grade level if not above, speak clearly but wouldn’t some difference still be there, we wondered………even when Charlie has learned speech or how to do certain skills, he does them in his “Charlie” way.

    And that’s the best way for him. As a parent, I felt really freed to stop thinking about “recovery” and all that—-much in our life with Charlie has been unexpected and different, and I’ve learned more than I thought I could thanks to him.

  • Dan

    Cliff,

    Thanks. Your insights are incredible for me to read! I really can’t thank you enough for sharing. (Ditto for everyone else, too.)

    We’re opting to be as open as possible with (about) our boys, but I want to have the option (also) of shutting off the dx (as far as advertising it) when we want (or when they want to).

    As an analogy, some friends of mine years ago had several adopted children (who happend to be of different races), and several biological children. When the subject of adoption came up, they say things like “3 of kids are adopted…can’t remember which 3.”

    I want to use that line about my kids. (“Yeah, we got auties in the family…can’t remember which one(s).”)

    I don’t know we’ll ever be to the point of being able to say that. I do worry about that, but I have to set that worry aside (leave it in God’s hands), and focus on today.

    Kristina, you ask a loaded question with “how can a child be really recovered.” It’s the whole ‘cure’ thing all over (with associated side-bars on identity, etc). I suspect my boys will always have ‘elements’ of autism in their lives; I feel like I do, and I don’t consider myself to be on the spectrum. (Quirky? Yes, but that’s another whole book to write.) I don’t want to eradicate the whole of autism, since that entails much of what I love as well as don’t love about my kids. Looking at it as a developmental ladder, I want to see my kids get to the highest rung available to them. To include communication, social interaction, awareness of their environment, personal independence, etc. Of course, I want the same for my NT daughter. Heck, I want that for me, too!

    And, if I haven’t said it recently enough, loud enough, thanks again for an awesome blog.

    Regards,

    Dan
    So. Maine

  • Cliff

    You know, I guess there isn’t a point where you are “fully” recovered, but that you get along regardless. I still have some things that are somewhat impractical (have an odd hatred of phones, can’t go to movies because of sensory issues, etc.). And then there are the oddities (can only speak loudly, fairly loudly, and extremely quietly). But, for the most part, I can pass off without one knowing. It’s usually some huge surprise, which really is flattering in some regards, but withholding everything is far more of an issue. That can be a disservice to those trying to know me and to myself, who has a load of different issues in the day which often get ignored, causing me to be in truly repulsive situations.
    At one point, my parents and others thought that I really had “transcended” autism. and in retrospect they admit they were very wrong to think that. At some level, it was just me hiding issues because everyone else was handling them (not true, but I was given no particular reason to think otherwise). I can easily say my self-confidence was enhanced with the understanding than without.
    It’s funny, because I’m asked “Are you sure about that?” or told “It must be a really light variation”. If only they could see my home videos where I am hitting myself in order to get rid of a sensory issue, attacking a therapist with a toy truck, or running away screaming from my sister’s birthday party (she’s forgiven me later). And even now I’m really the same person with some new learned things, almost like learning which fork goes with salad and the like.
    I do understand, though, that sometimes you don’t really want that information out, because of practical bearings. Exactly how this balance works, allowing your children to know while not having them regularly tell as such until they really aren’t going to be judged by it, is one I’m not sure about.
    I might hope, though, the best for everyone regarding their children reaching new heights. And thank you for the compliments.
    Cliff